How Huntington's disease progression affects a spouse | What might...
A look at how Huntington's disease progression affects a spouse
The other day, a lightbulb went off when I thought about the things that Huntington’s disease might rob from me.
I’m married to someone who was diagnosed with Huntington’s in 2018, and I often focus on what the disease will steal from her (or us). But I hadn’t previously considered what it will rob from me.
All of this was prompted by a question my wife, Jill, asked me: “Do you ever feel like you missed out on something?”
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She asked me this after a phone call we had with our daughter, Alexus. Alexus and her husband, René, were planning to rent a boat with some friends for a day trip off the coast of Maine.
Their plans included riding jet skis. “Wow, cool!” I exclaimed upon hearing about it.
After explaining that the word “cool” is no longer cool, Alexus said she wouldn’t be participating in the jet ski excursion.
Jill laughed. I didn’t get the joke, as it wasn’t in the form of a pun, my preferred avenue of humor. I wondered aloud why she didn’t want to do something “hot” (not cool).
Alexus paused for a second (she never laughs at my dad jokes) and then asked, “Have you ever been on a jet ski?”
She seemed dumbfounded when I said no, and then asked a follow-up question: “Didn’t you grow up in Florida?”
I did, but Jill moved the conversation along. She understands that I was a serious kid while growing up, and then became a serious adult. This was the result of being raised in a dysfunctional home, which prevented me from fully enjoying life and all that the world had to offer.
No Disney, no ‘Sesame Street’Even something as simple as jumping in a puddle in the rain was too “juvenile” for me. Jill taught me about the freedom that comes from jumping in a puddle just to be silly.
So, yes, I did miss out on things when I was younger. I never watched an episode of “Sesame Street,” for example, I didn’t go to my high school prom, and I never watched Disney movies.
Jill’s love of life showed me a different way of living. Now that we live near Washington, D.C., we’ve visited several museums. During the Fourth of July holiday, we watched the city’s famous fireworks display, something I haven’t done since I was a kid. And I’ve almost caught up on watching every Disney film ever made.
As my contemplation of the past switched to thoughts about our future, I was struck by the knowledge that Huntington’s could rob Jill of her zest for life. And in doing so, Jill will cease teaching me how to enjoy life.
Jill looked at me and knew what I was thinking.
“We’ll cross that bridge when we get there,” she said.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
Carlos Briceño Carlos Briceño is a journalist and director of communications who, through the grace of God, has been blessed with a brilliant, beautiful, and courageous wife and daughter. He currently lives in Maryland, about a half hour away from Washington, D.C., with his wife, Jill. In 2018, Jill found out she was gene-positive for Huntington’s disease at the age of 41, while his daughter found out she was gene-positive for HD in 2019 when she was 22. Jill and Carlos write about their day-to-day struggles and triumphs to share their knowledge and to let others know they are not alone. Carlos loves to evangelize, read, play soccer, and pepper his conversations with — according to family members —really bad puns. (For the record, Carlos thinks his puns are really punny and funderful.)
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